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Thursday, May 31, 2012

Tommy Edison (pictured) knows you've got questions about blind people — because people have been asking him those questions all his life.

Like: Do you see stuff in your dreams?

And: How do you count your paper money?

And: Do you think you could hit a golf ball?

Actually, that last one was a question Edison had and decided to answer, along with the others, in a online video series he calls "The Tommy Edison Experience." The videos are shot and edited by his buddy Ben Churchill, a documentary filmmaker, and share a website with a series called "Blind Film Critic."

Yes, a blind guy reviews movies. In fact, Edison — who works as a traffic reporter for a Connecticut radio station — became mildly famous for his pithy reviews about a year ago. His web traffic spiked after master critic Roger Ebert mentioned him online, Edison says.

With the attention, came the questions —starting with how a blind man can appreciate movies.

"I like strong characters in a good story and I like a few laughs," Edison says in a phone interview.

Lots of dialogue helps.
But in between going to movies and reporting on traffic tie-ups (using police scanners and calls from listeners), Edison is just a regular forty-something guy who has been blind since birth. The point of the "experience" videos, he says, is "to show sighted people how I live and how I do things," educate a bit and have some fun.
So Edison has answered questions about his:

•Dreams: "I don't see in my dreams. It's all smell, sound, taste and touch," he says.

•Money: In one video, he buys a beer and has to ask the cashier to name the bills as he takes his change so he can line them up in order. Every blind person needs a system, he explains, because U.S. paper currency is not differentiated in a way blind people can detect (though it soon will be, say advocacy groups for the blind).

•Golf game: It's pretty good - for a blind guy. (He hits a ball after a few lessons).

•Travel style: He's an able-bodied guy, but has to explain to an airport employee (repeatedly, with impressive good humor and politeness) that he doesn't need a wheelchair to get through a terminal.

•Celebrity curiosity: If he could see three celebrities, he'd choose singer Tom Waits ("I've got to see the face that goes with that voice"); actress Angelina Jolie ("I keep hearing how beautiful she is") and Jay Leno ("the devil himself," says the Conan O'Brien fan). He's also curious about the Muppets.
Edison doesn't speak for all blind people.

But it's nice to have someone out there answering the kinds of questions many blind people get all the time, says Eric Bridges, director of advocacy at American Council of the Blind.

"People are naturally curious," he says. "And humor is the greatest device to sort of cut the tension and put people at ease."

The videos seem "very positive and informative," says Chris Danielsen, director of public relations at the National Federation of the Blind.

Social media creates opportunities for many blind people "to get our own stories out," he says.

For Edison, that means sharing his reviews of Cabin in the Woods and The Hunger Games (he didn't love either) and answering the question: "Can you open your eyes?"

The answer, as he demonstrates in one video, is yes, he can. "Next time," he promises, "I'm going to show you how I perform surgery."

Bud Clayman (pictured) is not the sort of person who typically attracts cameras.
Pudgy, with a droning voice and a cackle his own father says makes him
sound like a chicken, Clayman harbored dreams of becoming a filmmaker in
Los Angeles after college — dreams complicated by his Asperger's
syndrome, obsessive-compulsive disorder, bipolar disorder and
depression.

Three decades and several breakdowns later, he's made his first film: a document of his own struggles with mental illness.

OC87,
named for the year Clayman experienced his initial breakdown (and the
shorthand he uses to describe his altered state of mind), is one man's
attempt to exorcise his demons.

But it's not
exactly a singular vision. Clayman has difficulty making decisions, and
so shares director's credit with psychologist Scott Johnston and veteran
documentarian Glenn Holsten (Saint of 9/11),who keep the camera focused squarely on Clayman.

They
alternate interview segments with some inventive scripted sequences,
the latter re-creating the internal debates Clayman has when confronted
with basic social situations like buses and restaurants.

The film isn't really about all the hurdles listed in its unwieldy subtitle — The Obsessive Compulsive Major Depression Bipolar Asperger's Movie
— as much as it is about Bud Clayman. Ultimately it's someone else's
diary. There are many moments where Clayman's experience speaks to
something universal, but other details feel too private, too specific,
for our eyes.

We watch Clayman's first
student film, a tour video for his Jewish high school where, strolling
through the grounds, he sings the praises of the "confidence" the school
provides.
We observe him at a speed-dating event, where he chats about movies with every rotation.

And we see his struggles with the film itself,
as he argues with his co-directors over his right to lean back in his
chair. Over the course of some embarrassingly poor, zoom-happy
camerawork — not Clayman's doing — we rarely leave the man's side.

This
insularity becomes stuffy after a while. Claustrophobia is the point,
of course, since Clayman's daily struggles take place inside his own
head. And he has an endearingly wry and self-deprecating on-screen
presence, laughing at his disheveled apartment and overstuffed wallet.

Yet
as viewers, we may instinctively crave more than what Clayman alone can
offer us. Segments where he cedes screen time to others, including the
bipolar General Hospital actor and mental-health advocate Maurice Benard, are a relief.

As
impressively candid as Clayman is on camera, he's still holding back,
often lapsing into psychology-approved terminology. How close did he
come to the edge? How did he spend his years in treatment? Does he
think, at the conclusion of this movie, that he'd be capable of
directing one by himself? His climactic revelation, a staged showdown
with his "darker side" modeled after a Lost in Space episode, is fun but empty, and makes for an unsatisfying conclusion.

More
revealing are Clayman's interactions with his parents. His faithful
mother, Lila, selflessly donates her level head to the gargantuan task
of cleaning the apartment, while his watch-mogul father, Mort (who
reluctantly bankrolled the film), still harbors doubts about the
validity of the therapist's diagnosis. Bud was just "lazy," Mort
insisted when the problems started. The label is telling about the
contrasting ways the two men interpret the world, and its quick mention
makes for one of the film's most profound moments.

But Bud's not lazy, not by a long shot. In OC87 he
represents a group of people who are rarely offered any media exposure,
and he comes bearing a message of hope rather than just a sob story. He
has something valuable to offer, even as we wish there were more like
him on screen.

Wednesday, May 30, 2012

Media dis&dat note: I watched the Push Girls premiere May 29, when it was available on iTunes. Really good. I might quibble with a
word or two here or there, but other than that, I think it is more down to earth
than most reality shows. And its drama comes from things that are pretty
dramatic so it escapes some of the "cheese factor" of other reality shows. I'd
love to hear what others think of it.

They're ambitious, beautiful, ready to take on any challenge life throws their way. And being wheelchair-bound does not hold them back.

The lives of four such women are featured in Push Girls, a 14-episode, unscripted documentary series premiering Monday June 4 at 10 p.m. ET/7 PT on the Sundance Channel.

The women, close friends all living in Los Angeles, hope a glimpse into their lives will help change people's perceptions about the disabled.

"Often people see the chair first and person second," says Sarah Barnett, general manager at Sundance Channel. "When you see the show, it reverses this. It challenges you to say that these women are living their lives in courageous ways and inspires viewers to really want to apply what they see to their own lives."

Ranging from a 29-year-old aspiring fitness model who is designing a clothing line to a 42-year-old hip-hop wheelchair dancer contemplating having a baby with her husband, the women have starkly different circumstances. But they share a positive outlook that has led to their strong friendships.

"When we're going through hard things in our individual lives, we're able to bond and see positive things," says Mia Schaikewitz, a one-time competitive swimmer looking to return to the sport. She was paralyzed from the waist down in high school when an arteriovenous malformation ruptured in her spinal cord.

When Angela Rockwood was paralyzed in a car accident in 2001, she faced a choice about how to move forward, she says.
"I made the decision to take the positive path," Rockwood says.

Despite being told by doctors that she was likely totally paralyzed from the neck down, she can now operate her wheelchair and feed herself, among other things. She also has resumed her career as a model and actress.

"I picked myself up and have never looked back."
Peter Wilderotter, president of the Christopher & Dana Reeve Foundation, says the series has important lessons about overcoming challenges. "Showing what daily life is like in all its ups and downs sends a message of education and hope, and will lead to better understanding and better inclusion."

A study by the foundation found about 1 in 50 people — 6 million in the USA— are living with paralysis.

"We want to wake something up in people," Rockwood says. "Quit sweating the small stuff and live life to the fullest. You never know what can happen, so embrace every moment."

A new lawsuit contends that it is very difficult for disabled individuals to appear as contestants on Let's Make A Deal, the TV game show that has been around for decades and now airs on CBS.

Two plaintiffs, Arnie Pike and Christie Rudder,
both of whom use wheelchairs, are suing CBS Broadcasting,
Fremantlemedia and other producers of the show, alleging they violated
the Americans with Disabilities Act and California's civil rights laws
in the way the show has allegedly failed to provide full and equal
access to facilities and services.

The lawsuit filed on Friday in California federal court details the
big obstacle course that those with disabilities have to go through in
order to participate on Let's Make A Deal, which first aired in
1963, recently celebrated its 500th episode on CBS, and is famous for
the way that the studio audience members wear costumes in order to get
selected to be the "traders."

Pike and Rudder say they got tickets for the show and arrived in
costume on July 29, 2011. However, there was no on-site parking, so they
had to make a deal with the manager of a nearby Denny's to park their
van. Unfortunately, that meant having to cross on wheelchair two busy
streets, Sunset Boulevard and Van Ness Avenue. Pike says she only made
it with assistance from someone else and suffered "frustration and
embarrassment."

After making it to the studio, they were escorted away from the line
to wait in a raised trailer. But the only point of entry, says Rudder,
was a "very slippery ramp," and the first attempt to navigate resulted
in falling "frighteningly backwards." So a security guard helped her
out, but even he had trouble pushing, falling on his face. Rudder
experienced "great concern and embarrassment."

The two plaintiffs got hungry, but were allegedly told by reps for
the show there wasn't an accessible place for them to purchase food.

Pike had to use the restroom but was allegedly told there wasn't an
accessible place to use one, so she says she had to wait five hours.

Eventually, they finally got to the soundstage, but only after
"popping a wheelie" to get up another ramp. The lawsuit says, "This
entire sequence of events caused Rudder to feel humiliated, embarrassed,
frustrated, exhausted, and fearful of serious injury."

They allegedly were separated from the other audience members in an
"extremely dark" place full of tangled cables and plywood to the
"extreme right" and with views obstructed by six cameras and other
equipment.

Rudder asked how she would be able to get to the contestant stage if
selected, and a show employee allegedly answered that a ramp would be
brought out. It doesn't look like they were picked anyway.

After the taping ended, the plaintiffs say they "were again forced to
encounter the same barriers they had faced when entering the
soundstage."

They are seeking an injunction that orders the defendants to alter
their facilities, an injunction to shut everything down until the
producers comply, and further monetary damages.

CBS hasn't yet returned a request for comment. A rep from Freemantle wasn't available.

According to court records, Pike and Rudder have collectively brought
about 20 discrimination lawsuits against different parties, including
fitness clubs, hotels, beaches, grocery stores and libraries. Pike
previously sued over ABC's Dancing with the Stars. Many of those cases appear to have settled.

Sunday, May 20, 2012

When Rosemarie Rossetti moved into her new home on Friday, she effortlessly guided her
wheelchair from the van through the front door of the Gahanna-area house. That simple act is the
culmination of 14 years of frustration, dreams and persistence.

The home Rossetti will share with her husband, Mark Leder, is more than just a stately
prairie-style residence. It serves double duty as the Universal Design Living Laboratory,
showcasing features that make a home accessible to those with a wide variety of abilities.Rossetti,
58, and Leder, 54, came up with the idea after a tree fell on Rossetti in 1998, putting her in a
wheelchair. After trying to modify their old two-story home and failing to find a new home that met
their needs, they enlisted the support of donors and broke ground on this home in September 2009,
hoping to move in the following summer.

“For a nine-month project, this sure has taken a long time,” joked Rossetti, a motivational
speaker and writer.

Three years, $1 million and 182 corporate donors later, the home is finished. What started as an
exhibit of handicapped accessibility morphed into what might be the most technologically
sophisticated home in central Ohio.

“The home is state-of-the-art. It’s 2012’s best — very, very best,” said Robert August, a
40-year veteran of the housing industry who runs North Star Synergies near Denver and served as a
consultant to the project.

From simple features such as barrier-free showers and motion-sensor lights to fire-suppression
sprinklers and a massive air-handling system, the home is a showcase of contemporary home-building
technology.

Some of the features are quirky, such as a pasta cooker recessed into the kitchen counter,
4-inch-deep pantry shelves and a stove with a door that opens sideways.

Other features are simple but huge for those in wheelchairs: wide doorways and halls, lever door
handles rather than knobs, kitchen and bath sinks that allow a wheelchair to slip under, pocket
doors, an elevator, raised garden beds, barrier-free access to the outdoors, multiple-height
kitchen counters, and a massive closet/laundry room combination that can be navigated by a
wheelchair.

Other features were driven more by the couple’s desire to own the first privately built home in
central Ohio to be certified as a Leadership in Energy and Environmental Design (LEED) home. The
home has already been designated a green building by the National Association of Home Builders.The
home’s green features include structural insulated exterior panels instead of wood studs, a
factory-made concrete-and-foam basement wall system, solar panels, permeable pavers in the patio
that allow rain to pass through and LED lights throughout the home.

Finally, there are the features rarely seen in even custom homes: rubber matting under hardwood
floors to provide cushion and soften sound, sound-deadening drywall in the master bedroom, and a
custom stained-glass ceiling over the library.

Perhaps the most unusual feature of the house is that it doesn’t look so unusual.

“You don’t walk in there and say, ‘Oh, this house is meant for someone with a wheelchair,’ ”
said the home’s architect, Patrick Manley, president of Manley Architecture Group in Columbus. “We
wanted to show that a home designed for someone with limitations doesn’t have to be limited.”

The home includes 3,500 square feet in a single story, with a full basement, much of which will
be finished.

The heart of the home is a cavernous two-story great room that can host large gatherings. The
main floor also includes a master bedroom, a guest bedroom, offices for both Rossetti and Leder and
a library alcove off the great room.

For Rossetti, the home signals triumph but also liberation.

“I no longer have to ask Mark to help because I can’t get something or can’t do something,” she
said.

“I won’t have the fatigue or the sore shoulders chopping something on high counters, or the
fatigue at the sink because I can now roll up to it instead of sitting sideways, and I can take a
bath on my own, and garden. I have not been able to go outside since my accident. I was always
relegated to inside the house. Now I can grow vegetables and flowers. . . . It’s the whole idea of
taking back my life.”

After landscapers complete the exterior work and Rossetti and Leder finish moving in, the couple
plans to open the home for a month for tours to raise money for spinal cord research at Ohio State
University. After that, they will continue to open it for special events and tours to architects,
designers, manufacturers and others in the home industry.Rossetti and Leder don’t know how often
companies or individuals will want to visit the home, but allowing that access was essential in
attracting donors to the project.

“It would ordinarily be harder (to enlist donors for a private
residence), but these companies have the right to come back there anytime if they give Mark and
Rosemarie notice,” said consultant August, who helped sell the project to companies. Rossetti,
Leder and others involved in the project hope companies continue to use the home as a laboratory
for new products. They want the home to become a catalyst for change in the homebuilding industry
by showing all the possibilities in “universal design,” a style of building that accommodates those
of varied physical abilities.

“I think it’s going to have one of the biggest impacts in residential design in many years,”
Manley said. “What the Universal Design Living Laboratory will show is ‘OK, this is pretty much
everything you can do to accommodate someone in a wheelchair.’ ”

While the home’s array of features
pushed the cost to an estimated $1.1 million, Manley and Rossetti say they hope visitors realize
they don’t need all the features to make a home more functional for those with physical
limitations. Many elements of universal design — such as wider doorways, lower countertops, lower
light switches and roll-under sinks — don’t add much cost to a new home as long as they’re planned
from the start.

“Some people will be critical of the expense,” Rossetti acknowledged. “But much of
this is replicable in a Habitat for Humanity home, a small 900-square-foot home. The same
principles can be used across the spectrum from low-budget public housing all the way to luxury
custom homes.”The construction took far longer than a conventional home largely because the couple
relied on donors for much of the cost.

While some of the biggest contributors — Classic Metal Roofing Systems, Cosentino, Florida Tile,
KraftMaid, Kohler, Marvin Windows and Doors, and Whirlpool — were consistent with their support,
other support evaporated when the economy took a nose dive. Also delaying the project was the push
for LEED certification, which required considerable documentation and inspections, and some
unconventional building processes. No Dumpster was used on the site, for example. Excess building
materials were donated or recycled. Even workers’ food wrappers were separated for recycling.

“I was speaking at Walt Disney World (on) May 1 and while I was there I saw an ad from Disney
saying ‘Where Dreams Come True,’ ” Rossetti said.

“Look at this big, amazing hairy project we took on and implemented. It was overwhelming,
overcoming obstacles with the economic disaster in housing. . . . It just really tested our
dedication to our dream and to each other, but we persisted.”

Saturday, May 19, 2012

‘South Africans are as deaf as the ground,” said Nomasonto Grace Mazibuko (pictured), the executive director of the Albinism Society of Southern Africa. “Even our government refuses to recognise us.”

One in 4 000 people in the country is affected by albinism.

This inherited condition is explained as a lack of pigment, which affects the eyes, hair and skin. People living with albinism are particularly vulnerable to skin cancer and a range of eye problems that can lead to blindness.

In response to the widespread disappearances and killing of people with albinism in Tanzania, Burundi and other East and Central African countries, the United Nations officially declared albinos “persons with disabilities” in 2008.

Though South Africa signed the UN Convention on the Rights of Persons with Disabilities in 2007, Mazibuko said no recognition had been given to people living with albinism or their rights. She said public hospitals had an obligation to provide sunscreen lotion to all people affected by albinism.

But Simon Zwane, the spokesperson for the Gauteng health department, told the Mail & Guardian he was “not aware of any such programme”.

A spokesperson for Chris Hani Baragwanath Hospital, Nkosiyethu Mazibuko, said: “I believe something like that [programme] is still to be rolled out, but I am not familiar with the details and I cannot confirm it.”

In Tanzania, over the past few years more than 50 people with albinism were murdered for their body parts before the government officially recognised them as a minority under threat. In South Africa, the albinism society believes it is just a matter of time before the same thing happens here.

“It is already here. I am not looking forward to the day when our government will say that 50 people with albinism have disappeared,” Nomasonto Mazibuko said.

Her concern is shared by Nthabiseng Matjie (15), a confident high-school student who loves maths and wants to be a surgeon. She said she feared for her life after she heard the news of the killing of people with albinism in Tanzania.

“I was afraid that somebody would come and get me and cut me up to pieces. I didn’t feel safe,” she said.

In May 2011, Matjie’s nightmare became a reality, with the widely reported disappearance of Sibusiso Nhatave, a 14-year-old South African boy with albinism. Nhatave was abducted outside his school in KwaZulu-Natal. The community believes his kidnapping is connected to witchcraft, but no evidence has been found. Nhatave is still missing.

Mazibuko said people with albinism were vulnerable to prejudice at many other levels. “When we get into taxis, people still move to the other side, or even refuse to use that taxi. We are still called isishawa [a Zulu word for a person who is cursed] and inkawu [an Nguni word for ‘white baboon’].”

She said that, when people with albinism applied for jobs, “we can see on the faces of the people on the panel that no way are we going to be selected. This needs to end. We should not have to feel caged in our own country.”Matjie’s cousin, Clyde Meela, said that, in African culture, people preferred to avoid the topic of albinism. “I have never really thought about what she [Matjie] goes through every day. I love and support her, but in our culture we don’t talk about things like this,” Meela said.

“What gives us the right to ostracise people with albinism? It is us who need to change our attitude.”

Matjie wondered how much longer she would have to contend with pre-judice. “Let me be honest,” she said. “I don’t want to be an albino. I want to be black. I want to be free and normal. I want to play in the sun like other kids. I want to go to a school where people are like me, where people will understand me. I am tired of thinking about the next time that someone will judge me and give me that look.”

Mazibuko said she knew the struggle was just beginning.

“The best thing for us to do is unite and get educated,” she said. “I am waiting for the government to come knocking on our door.”

"When you come to grips with the injuries like that, you don't think of anything in your future," says Gadson who makes his feature film debut in 'Battleship.' "I never imagined anyone outside the military would be interested in me."

"When you come to grips with the injuries like that, you don't think of anything in your future," says Gadson who makes his feature film debut in 'Battleship.' "I never imagined anyone outside the military would be interested in me."

"When you come to grips with the injuries like that, you don't think of anything in your future," says Gadson who makes his feature film debut in 'Battleship.' "I never imagined anyone outside the military would be interested in me."

Gadson, a lieutenant colonel with the Second Battalion and 32nd Field Artillery, was returning from a memorial service for two soldiers when his vehicle passed a roadside bomb on May 7, 2007.

Gadson remembers the detonation sending his body tumbling through rubble, then medics placing him on a stretcher in a helicopter, his severed feet sitting in his lap. He awakened days later at Walter Reed Army Medical Center in Washington, D.C., his legs amputated above the knees.

"When you come to grips with the injuries like that, you don't think of anything in your future," he says. "I never imagined anyone outside the military would be interested in me."

Turns out a lot of folks were, including the New York Giants and now Hollywood. Gadson makes his acting debut in Battleship, playing Lt. Col. Mick Canales, a vet struggling with recovery much as Gadson did.

A 24-year veteran and director of the Army's Wounded Warrior program, Gadson says his goal in rehabilitation was never to become a spokesman for the wounded. It was just to walk again.

Not only would he regain mobility on "power prosthetic" legs — artificial limbs equipped with gyroscopes, accelerators and hydraulics to emulate a knee — Gadson would become a symbol of recovery. After the news media picked up his story, he began fielding offers to be a motivational speaker.

His accepted, including making a pregame speech to the Giants before they won the 2008 Super Bowl.

Gadson tailored a simple but resonant theme: "Whenever you have a formidable task, instead of looking up, look down. Literally take it one step at a time. You'll be overwhelmed by the broader view."

Battleship director Peter Berg was overwhelmed by Gadson's story. He read an article about the soldier in National Geographic and tried for three weeks to offer him a part in the movie. But every time he called, Berg — who is built like a lineman and cusses like a sailor — was met with skepticism.

"He kept thinking I was an Army buddy trying to prank him," says Berg, who introduced Gadson at Battleship's L.A. premiere to a standing ovation. "I finally had to fly out to D.C. to convince him. He's a badass."

A former West Point football player, Gadson waved off his double for the movie's stunts, including a fight scene with an alien.

"I know it's clichéd, but this guy is a walking example of positive energy," Berg says. "He has no sense of self-pity. You wouldn't believe the energy he brought to the set."

Gadson says he is open to more film roles, as long as they don't interfere with his current mission.

"As a service member, there are a lot of people who have endured what I have, but their paths won't be highlighted," Gadson says. "I want to speak up for them. I know we're not promised tomorrow. But there is a road ahead."

Tuesday, May 15, 2012

A Michigan high school student athlete with
Down syndrome might get to keep playing sports during his senior year
despite his age.

The Michigan High School
Athletic Association said May 7 that its representative council had
approved a proposal for a vote by member schools that would change the
group's constitution to allow for a waiver of its maximum age limit
under "narrowly defined" circumstances.

Under current rules,
students who turn 19 before September 1 are not allowed to compete. The
rule is intended to prevent the possibility of injury or competitive
advantage from an older, more developed athlete playing against younger
students.

Eric Dompierre (pictured), the
Michigan student with Down syndrome, turned 19 in January. He was held
back in kindergarten because of his disability.

The athletic association
did not mention Dompierre by name, but it released a statement that was
clearly meant to deflect criticism over the way it has handled the
question of his participation.

Ballots will be mailed this week, the athletic association said, and schools will have two weeks to return them.

"The representative
council does not advance proposals it does not want the membership to
support, and an affirmative vote by schools is being specifically
requested on this proposal," it said.

The specific wording of
the proposal was not immediately available. It is expected to be posted
on the group's website no later than May 14. A two-thirds majority is
required to change the organization's constitution.

Dompierre has played sports with other children in Ishpeming, Michigan, since he was in elementary school.

"We didn't know how far he'd go, how many coaches would keep him on the team," said Dean Dompierre, Eric's father.

When he got to high
school, Dompierre was invited to keep playing. Now a junior, he is on
the Ishpeming High School football and basketball teams. He attends
every practice and works out with the other players and sometimes plays a
few minutes at the end of the game.

During this season's
basketball playoffs, Dompierre brought the house down. After maintaining
a nice lead, the team put Dompierre in the game and he hit a
three-point shot against rival Negaunee High School.

"I was on the left side
behind the three-point line and they passed me the ball," Dompierre
said, smiling as he recounted the game. "I heard the fans, including my
mom crying."

Dompierre's father was in the stands with his camera and captured the amazing reaction.

"I videotaped the crowd
on the other side and it was made up of mostly Negaunee fans, including
their student section, and they were all on their feet cheering for
Eric."

The same thing happened
when Dompierre kicked his first extra point for the football team toward
the end of a game two years ago.

"I was amazed that he
even had the opportunity to kick, and then when he did it, I thought
woo-hoo! And then watching the kids react, they carried him off the
field; it was just one of the best moments," recalls Eric's mother, Jill
Dompierre.

For the past two years,
the Dompierres, with the support of the Ishpeming School District, have
tried to get the rule changed so Dompierre can play during his senior
year.

"The rule is 100 years
old. We've come a long way in those 100 years in this country in the way
that we involve and include people with disabilities. And I think it's
time that the rule catches up with that," said Dean Dompierre.

BERKELEY, Calif. — Even in middle school, Alva Gardner had
her fashion standards. Jeans made expressly for wheelchair users — cut
high in the back, low in the front, Velcroed at the fly — seemed like a
potential boon.

But when the mail-order pants arrived on her doorstep, Gardner, then
13 or 14, refused to wear them. Although easier for her to put on and
take off than standard jeans, they were baggy and ugly, recalls the UC
Berkeley undergrad. And baggy and ugly, she says, “would not have been
good for my social life.”

Fast forward to 2012: Gardner, now a 22-year-old Berkeley senior,
aspires to work in the clothing industry — designing for people, women
especially, whose bodies don’t fit the “norm” (a word she utters
ironically, aided by air quotes).

As illustration she calls up, on her smartphone, a running list of
accessible-fashion concepts awaiting execution by a skilled seamstress —
a pair of pants, for instance, with its primary pockets moved to the
knees, where people in wheelchairs “could actually use them.” On cold
days the same lucky individuals could don a Gardner-designed
fleece-lined poncho, complete with metal grommets for easy attachment to
the chair.

And what about an umbrella on a swivel mechanism for easy raising and
a dry, hands-free ride? “I need to make some friends in the engineering
department,” Gardner says.

Her interest in fashion is tied, she says, to her discovery and
exploration of her sexuality — an activity rarely associated with those
in the disability community. Gardner, who was born with cerebral palsy,
begs to differ with the misconception. “People with disabilities are
sexually active. Don’t assume they’re not,” she insists.

She gave public voice to these sentiments earlier this year at a campus performance of The Vagina Monologues,
playwright Eve Ensler’s award-winning collection of monologues on
women’s sexuality. The play serves as a springboard for “V-Day” benefit
performances each February, which often include new monologues written
by participants.

Gardner’s very personal poem with a four-letter title chastised
“able-bodied society, and men specifically,” she explains, for
discounting sexually attractive women like herself because of one
“non-normative” vital statistic — a disability. She recalls it getting
“an amazing reception” — and how several people inquired whether Ensler
had written the monologue. “I was flattered!”

An American Studies major with concentrations reflecting her protean
interests (psychology, art, disability studies, gender and women’s
studies), Gardner’s courses at Berkeley have given her “academic
backing” to understand — and a vocabulary with which to talk about — “a
lot of what I experience” as a woman with a disability, she says.

Invisibility is a big part of that reality. Characters with “atypical
bodies” are few and far between on TV, and one rarely sees a model with
a visible disability in a fashion ad, Gardner observes.

She plans to stay at Berkeley for a fifth year to explore this
fertile terrain, in a thesis looking at fashion and popular culture. Its
theme in a nutshell: “the inaccessibility” of fashion advertising, “and
how it influences the self-esteem of people with disabilities in an
able-bodied society.”

She also hopes to continue the “public-speaking career” she began at
age 8, when she spoke to a roomful of college students studying special
education — about what it was like to be a kid with a disability.

Looking back now on that childhood, Gardner describes it as “hard”
but “privileged,” too — because of an “amazing mom who made me very
strong.” Middle-schoolers “are mean, heartless people,” Gardner says of
her early teens. And while her high-school administration was
supportive, it was “tough to be the only kid in a chair,” she recalls.
“I got quiet and introverted, and that’s definitely not me.”

College has been “an entirely different world in terms of inclusion
and acceptance,” Gardner adds. “I don’t like using the word ‘normal,’
but disability is ‘normalized’ here.”

These days she guest-lectures periodically at UCSF Medical Center,
hoping “to break down preconceived notions” for future doctors. “Get to
know your patient,” she tells them. “Don’t be a mindless doctor who
arbitrarily prescribes. Know other options besides surgery and meds.”

She shares her personal experience: how, for instance, she does not
have the seizures typically associated with CP; nor has she had the
tendon-lengthening surgery often recommended for kids with the
condition. “Instead of mindlessly following the doctor’s orders,”
Gardner says, “my mom did research, talked to other parents, consulted
with doctors and actively advocated” on her daughter’s behalf — and an
“amazing pediatrician” respected “our opinions and voice” regarding
treatment options, she says.

Gardner has, in fact, done traditional forms of physical and
occupational therapy in her life. But she’s also participated in
activities that may surprise: swimming, skiing, snowboarding,
Feldenkrais, even (as cited on her Facebook page) power soccer and bungee-jumping off a high place, tethered only by an elastic cord.

“It was a lot of fun. I’d love to do it again,” she says of the latter. “And skydiving is on my bucket list.”

In the meantime, if there’s an able seamstress out there, or a clever
mechanical engineer, Alva Gardner would like to get in touch with you.

Saturday, May 12, 2012

Strictly Wheels are determined to showcase Wheelchair Dancesport to the
nation and May 9 they did just that with a fun-filled routine to Olly
Murs Dance With Me on "Britain's Got Talent."

The judges praised Gary and best friend Paula, who has been a
wheelchair user for eight years after contracting MRSA, 17 years ago,
while being treated in hospital for pneumonia, but Amanda Holden and
Alesha Dixon felt the performance didn't quite live up to the dancing
duo’s audition.

David Walliams loved it, telling the performers: “You have given a lot
of hope to people out there that there’s no such thing as impossible.”

Alesha Dixon said: “You are amazing, but the first time I saw you, you
were more daring so it didn’t live up to the last audition, but you’re
still incredible at what you do and I have to wish you luck.”

Amanda Holden agreed: “I felt a little bit disappointed and
underwhelmed tonight. You did a good job but I was just a little but
underwhelmed.”

Simon Cowell seemed to think it was great fun, telling them: “I enjoyed
it actually but Gary you’re like an excited poodle when you start out!
Because it was fun it was fun for us, well done.”

If Strictly Wheels make it to the final, they would give it their all in a bid to take the BGT 2012 crown.

It would be a dream come true for the performers to be part of the Royal Variety Performance.

They said: “It means an enormous amount to us, to be able to perform in
front of the Royal Family and actually let them see what we do for our
country when we are competing abroad. Also to be able to say we've
performed in one of the most famous shows in entertainment history.”

Friday, May 11, 2012

From California Watch. Pictured is Donna Lazzini with her son, Timothy Lazzini, who died at the Sonoma Developmental Center in 2005.

Wherever the developmentally disabled live, abuse is their neighbor.

It comes as deliberate assault by caregivers and sometimes relatives.
It comes as acts of frustration, when people exhausted from the
relentless difficulties of caring for patients with intellectual
disabilities shove and hit the vulnerable.

Government agencies are often judged as much on their response to
abuse as on their success at preventing attacks. By this measure,
California and New York have repeatedly failed, as news reports over the
past year have detailed numerous cases in which state officials
overlooked evidence of attacks and suspicious deaths.

Both New York and California are working to overhaul their abuse
response systems. However, the states are taking different approaches.

New York lawmakers plan to add a new independent overseer focused solely on the disabled. This model is considered the gold standard, patient
advocates argue. First implemented in Massachusetts, a disability
protection agency coordinates with state police on investigations of
community group homes and developmental centers.

California Gov. Jerry Brown’s administration is working to upgrade
an existing in-house police force that has long struggled to
investigate crimes at the state’s institutions for residents with
cerebral palsy and other intellectual disabilities. This force, called
the Office of Protective Services, is operated by the same state agency
that runs the institutions.

Ideally, California developmental centers officials would not be in
control of criminal investigations at their facilities, said Greg
deGiere, public policy director for The Arc and United Cerebral Palsy in
California. But the state is unlikely to spend to construct a new law
enforcement agency in the midst of budget shortfalls.

“That’s the problem with everything we do now, we try to fix problems
with no money,” deGiere said. “But there is stuff that can be done.”

One measure deGiere and other patient advocates have lobbied for is
having the governor's office, rather than the Department of
Developmental Services – which runs the facilities – appoint the
institutions' police chief. Such a move could make the in-house police
force more independent.

California lawmakers have also introduced two bills that would
require the institutions to alert outside law enforcement of suspicious
deaths and other serious cases, including sex assault allegations.

In a series of stories
in February, California Watch reported that detectives and patrol
officers at the state's board-and-care institutions routinely fail to
conduct basic police work even when patients die under mysterious
circumstances. The facilities have documented hundreds of cases of abuse
and unexplained injuries, almost none of which have led to arrests.

The state operates five developmental centers that house roughly
1,800 patients with cerebral palsy and other intellectual disabilities
in Los Angeles, Orange, Riverside, Sonoma and Tulare counties.
California is budgeted to spend $577 million on the patients and
facilities this fiscal year, or about $320,000 per patient. The legislation, SB 1051 and SB 1522, continued to advanceyesterday, approved unanimously by the state Senate Public Safety Committee.

Rather than expand state government’s role, the bills would seek to
better engage outside groups in tracking and investigating abuse. SB
1051 would require state and local police agencies to document when a
disabled person is a victim in their annual crime statistics.

The bill would also require developmental center administrators to
report cases involving “death or harm” to Disability Rights California, a
patient advocacy organization.

New York Gov. Andrew Cuomo this week announced theproposed
agency in that state would be responsible for prosecuting crimes
against the disabled, offering an abuse hotline and referring
allegations to law enforcement. It would also track caregivers found to
have abused patients and block them from working with the disabled or
people with special needs.

“I think it raises the bar significantly on the degree to which
states address the issue of abuse and neglect across all disabled
populations,” Nancy Thaler, executive director of the National
Association of State Directors of Developmental Disabilities Services, told The New York Times.

The measures in New York come in response to reporting by the Times, which revealed numerous cases of violence and 1,200 unexplained deaths at homes and institutions for the developmentally disabled.

Tuesday, May 8, 2012

The opening ceremony for the London 2012 Paralympics is called Enlightenment and will feature a host of deaf and disabled artists, local children and performers newly trained in circus skills.

Injured soldiers and past Paralympic athletes are among the cast who are starting an eight-week circus school course.

A flypast by Aerobility, a charity that trains disabled people to become pilots, will open the 29 August event at the Olympic Stadium.

It also sets out to be a celebration of the Paralympics coming home as the event originated in the UK as the Stoke Mandeville Games in 1948.

Organisers say another batch of tickets will go on sale later this month, including some for the opening ceremony.

London 2012 claims the number of tickets already sold is "unprecedented" this far ahead of the Paralympics. That may be true but in Beijing tickets were not being sold at this stage.

More than a million tickets have already been sold for London. The total number sold in Beijing was 3.44 million although almost half of those were bought by the government and given to school children.

A spokesman for the International Paralympic Committee told Channel 4 News that because of the size of the venues in Beijing the audience numbers were unlikely to ever be beaten but he was hopeful that the London 2012 Paralympics would be a sell out at around 2.4 million.

It is also hoped the London Paralympic games will reach the largest television audience of around 4 billion people compared to Beijing which reached around 3.8 billion.

Thursday, May 3, 2012

Drew Morton Goldsmith is no stranger to the art of filmmaking. In the
past six years he has already built a resume that would make any Tisch
student green around the gills: participation in more than 20
international film festivals with his film Treasure Diversity and awards from YouTube (at age 10, for the Sky’s the Limit contest) and the United Nations.

But it’s not the accolades that motivate Drew to continue his work.
As a fifteen year old with “significant disabilities,” Drew is
passionate about using filmmaking to open people’s hearts and expand
their minds.

Drew found inspiration in a challenging moment several years ago,
when his favorite English teacher, in a well-meaning gesture, told him
that she was going to make a donation to a certain Autism charity. As an
Autism self-advocate, Drew knew this charity to rely on what he calls
“pity-based marketing.”

He decided to use filmmaking as a means to expose this technique, and
to articulate the way it feels to be the person who is characterized as
pitiable for the sake of fundraising.

When Drew was accepted into the Project VoiceScape program, he was coming to the table with a rough cut of his documentary, No Pity. Drew has used his time with his mentor, Aaron Matthews (A Panther in Africa, My American Girls),
to expand the rough cut from its original format — entirely archival
footage — to include original footage Drew shot himself. “Aaron
encouraged me to give my film more of my own image — literally begin the
film with a sequence involving me. Aaron has also taught me about
leaving just a bit more on the editing room floor.”

“At each turn, Aaron reminded me that it was my work — I had the
final say — but he was there as a responsive sounding board. It was an
ideal working relationship.”

What is the most important message he wants his audience to take away from No Pity?

About Me

I am full-time Mass Communication faculty at Towson University in Maryland and adjunct faculty in the City University of New York (CUNY) Master's in Disability Studies program.
I research media and disability issues and wrote a 2010 book on the subject: Representing Disability in an Ableist World: Essays on Mass Media, published by Advocado Press.
The media have real power to define what the public knows about disability and that's what I research.